No Barriers Here
No Barriers Here is a co-produced approach to advance care planning that uses arts-based methods to build relationships and deepen conversations with people who experience inequity accessing palliative care.
What is No Barriers Here?
No Barriers Here was begun by Mary Stevens Hospice in 2020. The original pilot programme was funded by the Masonic Charitable Foundation through Hospice UK, and aimed to create a space where people with learning disabilities could explore their wishes for end of life care.
It used arts-based methods to allow participants to express their views about advance care planning (ACP) both verbally and non-verbally.
Project and outcomes
The programme is delivered through a series of three workshops, which are delivered by trained facilitators. The workshops explore key themes, including:
- Who am I and what is important to me?
- Where would I like to be cared for and how?
- What are my funeral plans?
- How would I like to be remembered?
As well as providing participants with the opportunity to express their wishes and views about the end of their life, the learning and knowledge gathered from the workshops is used to develop education for healthcare workers. This improves staff confidence and ability to work with people who are perceived as ‘different’.
Following the success of the pilot, the No Barriers Here team carried out a two-year research study that focused on engaging people from minoritised ethnic groups in advance care planning (ACP).
As well as identifying and sharing key leaning about participants’ experiences and views of palliative and end of life care, the research study found that the programme is transferable to any setting and with any group of people.
The programme has grown rapidly and won several awards. The team have now developed facilitator training to enable more providers to use the No Barriers Here model. There is also a Community of Practice for facilitators.
The programme has had a much wider impact than its original aim to improve ACP amongst people who are marginalised. Through the workshops, No Barriers Here has been able to build strong relationships with local communities and empower people to access wider health support, for example by helping them register with a GP.
“The first thing that struck me about No Barriers Here was the name - it unapologetically shines the light on the issue for those of us from minoritised groups. It is not us that are hard to reach, it is the barriers that need dismantling. It makes me feel safe.”
Participant in No Barriers Here research study
Facilitators, challenges and advice
The ethos of No Barriers Here is “doing with, not doing to”. Co-production is vital, as it enables the team to develop the programme alongside its intended beneficiaries. Without co-production, it would not be possible to gain a full understanding of people’s experiences.
Working in partnership with community groups has enabled the No Barriers Here team to build strong relationships with a wider range of people from minoritised groups.
The funding for the research study did not include enough money to properly pay people in the co-production team for their time. It is really important to recompense people fairly, especially when they may already be economically disadvantaged.
Tips and advice
Think about the balance of power when working with people from minoritised groups. Aim to facilitate discussion, rather than educate people. Don’t expect people to come to a clinical environment that might make them feel uncomfortable – hold meetings somewhere that is comfortable for your participants.
Be human. You need to be prepared to make space for discomfort and distress when you are having challenging conversations. Don’t ignore the wider needs of your participants. For example, if you know people in the group are using food banks, take extra refreshments and leave any leftover food behind for participants to share.
Have courage - find allies and work together. You can’t do this on your own!